General Updates | The LISTEN survey: motivators and barriers to participation in sickle cell disease clinical trials

The LISTEN study was a global survey undertaken with people who live with sickle cell and healthcare professionals. It was over a number of countries across the world and its aims were to understand from the perspective of healthcare professionals and patients the motivators as well as the barriers for people wishing to participate in clinical trials. I think the major key finding from the LISTEN survey, based on the data that we looked at just for the United Kingdom, was that it was very evident, number one, that people who live with sickle cell are aware of clinical trials in the UK. So that’s about 98% of all people in the UK living with sickle cell are aware of clinical trials. But when you drill down the data, only 24% of them want to participate in clinical trials. And that, from a patient advocacy perspective, is clearly a worry in the sense that organisations like ourselves, healthcare professionals, and indeed, I think industry, need to do more to enable people to participate in clinical trials. And I think some of the barriers are about trust and getting information from healthcare professionals. So that, I think, is a major finding. The other interesting, I think, finding from it is that what healthcare professionals believe are important motivators or barriers are different to what patients believe. And that is, I think, interesting and would suggest that more commonality and working together of patients and healthcare professionals could address those points.

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